E noʻonoʻo ʻoe e ʻeha mau ana ʻoe ma kou kua a i ʻole kou ʻaoʻao, a i ʻole ke ʻōlelo mai nei ke kauka ua kiʻekiʻe iki kou koko . Hoʻopoina pinepine mākou i kēia mau mea, me ka manaʻo he mea maʻamau ia. Akā i kekahi manawa ʻo ka mea i hūnā ʻia ma hope o kēia mau mea he pilikia e pili ana i nā puʻupaʻa e pono ai ka nānā ʻana. I kēia lā, ke kamaʻilio nei mākou e pili ana i ia ʻano maʻi, hiki ke hoʻomalu maikaʻi ʻia inā mālama pono ʻia.
I ka ʻōlelo maʻalahi, he aha ka ADPKD?
Kāhea mākou i kēia ʻo Autosomal Dominant Polycystic Kidney Disease , a i ʻole ADPKD no ka pōkole. ʻO ka mea e hana ʻia ana, aia i loko o kou mau puʻupaʻa, he nui nā ʻeke liʻiliʻi i piha i ka wai i kapa ʻia he cysts . Ke hoʻomaka kēia mau cysts e ulu, ʻaʻole hiki i nā puʻupaʻa ke hana i kā lākou hana maʻamau o ka hoʻomaʻemaʻe pono ʻana i ke koko.
Hiki i kēia ke alakaʻi i nā pilikia olakino e like me ke koko kiʻekiʻe , nā maʻi ʻōpū mimi , a me nā pōhaku puʻupaʻa. I kekahi poʻe, hiki i kēia kūlana ke ʻoi aku ka ʻino i ka hala ʻana o ka manawa, a hiki i ka hāʻule ʻana o nā puʻupaʻa. Akā, ʻaʻole ia e hana i nā mea a pau.
I nā hihia he nui, hiki i nā kānaka ke ola no nā makahiki me ka ʻike ʻole he maʻi ko lākou. Hoʻomaka ka ʻike ʻia ʻana o nā hōʻailona ma waena o 30 a me 40 mau makahiki. ʻO ia ke kumu i kapa ʻia ai ʻo "adult PKD."
ʻOiai ʻaʻohe lāʻau lapaʻau piha no kēia, inā ʻoe e mālama i kahi nohona olakino, e lawe i ka lāʻau lapaʻau i kuhikuhi ʻia e kāu kauka, a ʻoi aku hoʻi i ke kāohi ʻana i kou koko koko, hiki iā ʻoe ke hōʻemi nui i ka hōʻino ʻia i kou mau puʻupaʻa.
He aha nā hōʻailona o kēia maʻi? Pehea ko mākou manaʻo?
ʻAʻole nā kānaka a pau me ADPKD e loaʻa nā hōʻailona. ʻAʻole paha e ʻike kekahi poʻe ua loaʻa iā lākou no nā makahiki. ʻO nā hōʻailona maʻamau i waena o ka poʻe me kēia maʻi, ʻo ia ke koko kiʻekiʻe , nā maʻi pinepine o ke ala mimi , a me nā pōhaku puʻupaʻa . E wehewehe kākou i kēia mau hōʻailona.
| Nā hōʻailona maʻamau | |
|---|---|
| ʻEha ma ke kua a i ʻole ma nā ʻaoʻao ʻelua o ka iwi kuamoʻo | ʻO ka hapa nui o ka manawa, loaʻa kēia ʻeha i ka wā e pahū ai kahi cyst, kūkulu ʻia kahi pōhaku puʻupaʻa, a i ʻole kahi maʻi ʻōpū urinary. |
| Koko i loko o ka mimi | Hiki ke hana koke ʻia kēia. Hiki ke ʻano poni a ʻeleʻele paha ka mimi. |
| Ka hoʻonui ʻana o ka ʻōpū | I ka ulu ʻana o nā cysts, pehu paha nā puʻupaʻa a manaʻo e like me lākou e puka mai ana mai ka ʻōpū. |
I ka hala ʻana o ka manawa, hiki i kēia mau cysts ke ulu nui a hōʻino i nā puʻupaʻa, e alakaʻi ana i ka hāʻule ʻana o ka puʻupaʻa i kekahi poʻe. Inā hana ʻia kēia, nā hōʻailona e like me:
- Manaʻo luhi a me ka paupauaho ( Fatigue )
- Pono pinepine e mimi
- Nā pōʻaiapuni menstrual kūpono ʻole i nā wahine
- Ka luaʻi a me ka luaʻi
- Paʻakikī ka hanu ʻana
- Ka pehu ʻana o nā kuʻekuʻe wāwae, nā lima, a me nā wāwae
- ʻO ka hana ʻino ʻana o nā kāne
No ke aha e loaʻa ai kēia ʻano maʻi? He maʻi hoʻoilina anei?
ʻAe, he maʻi hoʻoilina kēia. I ka ʻōlelo maʻalahi, ua hoʻokumu ʻia kēia maʻi e kahi kīnā i loko o nā genes i loko o ko mākou kino. I ka pololei, ua hoʻokumu ʻia e kahi kīnā i loko o kekahi o nā genes ʻelua i kapa ʻia ʻo `PKD1` a me `PKD2`. ʻO kēia mau genes nā mea e hāʻawi i nā hunaola puʻupaʻa i ka hōʻailona "i ka wā e ulu ai". No laila, i ka wā e loaʻa ai kahi kīnā i loko o kekahi o kēia mau genes, ulu nā hunaola puʻupaʻa me ke kāohi ʻole a hoʻomaka nā cysts a mākou i ʻōlelo ai e hana.
No ka ulu ʻana o ka hapa nui o nā maʻi hoʻoilina, pono ʻoe e hoʻoilina i ka gene hemahema mai kou makuahine a me kou makuakāne. Akā ʻo ka mea kūikawā e pili ana iā ADPKD, inā hoʻoilina ʻoe i kēia gene hemahema mai hoʻokahi makua wale nō, ʻo kou makuahine a i ʻole kou makuakāne paha , e loaʻa i kāu keiki ka maʻi.
ʻO ia hoʻi, inā loaʻa kēia maʻi i kou makuahine a makuakāne paha, he 50% ka manawa e loaʻa ai iā ʻoe.
He mea kākaʻikahi loa, hiki i ke kanaka ke loaʻa i ka maʻi ʻoiai inā ʻaʻole i loaʻa i ko lākou mau mākua ka maʻi, akā hiki nō hoʻi ke hana ʻia e kahi kīnā hou i loko o kahi gene i loko o ko lākou kino. Eia naʻe, he mea kākaʻikahi loa kēia.
Pehea e ʻike ai ke kauka i kēia maʻi?
Inā manaʻo kāu kauka he pilikia kou i ka puʻupaʻa ma muli o kāu mau hōʻailona, hiki iā ia ke kuhikuhi iā ʻoe i kahi nephrologist . E nīnau ʻo ia iā ʻoe i nā nīnau e like me:
- He aha kou mau hōʻailona? I ka manawa hea lākou i hoʻomaka ai?
- Ua ʻike anei ʻoe i kou koko?
- Aia kekahi ʻeha ma kekahi wahi? Inā pēlā, ma hea ia?
- Aia kekahi o kou ʻohana i loaʻa i ka maʻi puʻupaʻa?
- Ua loaʻa iā ʻoe kahi hoʻokolohua genetic ma mua?
A laila, hana ʻia kekahi mau hoʻokolohua e ʻike ai inā he mau cysts i loko o nā puʻupaʻa.
- ʻO ke kiʻi ʻana o Ultrasound: Hoʻohana kēia i nā nalu kani e hana i kahi kiʻi o nā puʻupaʻa. ʻO kēia ka hoʻāʻo mua i hana ʻia.
- MRI Scan a i ʻole CT Scan: Hoʻohana ʻia kēia mau scan paʻakikī e ʻike i nā cysts liʻiliʻi loa e ʻike ʻia me kahi ultrasound.
Eia kekahi, hiki ke hoʻāʻo ʻia kāu DNA e ʻike inā he kīnā kou i nā genes 'PKD1' a i ʻole 'PKD2'. Eia nō naʻe, ʻoiai hiki i kēia hoʻāʻo ke haʻi inā loaʻa iā ʻoe ka maʻi a ʻaʻole paha, ʻaʻole hiki iā ia ke wānana i ka wā e ʻike ʻia ai nā hōʻailona a i ʻole pehea ka koʻikoʻi o lākou.
He aha kā mākou e hana ai i ka wā o ka mālama ʻana a ma ka home?
ʻAʻohe lāʻau lapaʻau no ADPKD. Eia nō naʻe, hiki ke mālama ʻia nā pilikia olakino i hoʻokumu ʻia e ka maʻi a hiki ke pale ʻia a hoʻopaneʻe ʻia paha ka hāʻule ʻana o ka puʻupaʻa. Pono paha ʻoe i nā lāʻau lapaʻau e like me:
- Nā lāʻau lapaʻau e hoʻolohi i ka holomua o ka hāʻule ʻana o ka puʻupaʻa: Hiki i nā lāʻau lapaʻau e like me Tolvaptan (Jynarque) ke kōkua i ka kaohi ʻana i ka emi ʻana o ka hana puʻupaʻa i nā pākeke e pilikia nei i ka ulu wikiwiki ʻana o ka maʻi.
- Lāʻau lapaʻau no ke koko kiʻekiʻe: He mea nui loa ka kaohi ʻana i ke koko.
- Nā lāʻau antibiotic no nā maʻi ʻōpū urinary
- Nā lāʻau hoʻopau ʻeha
Inā hāʻule kou mau puʻupaʻa, pono ʻoe e hana i ka dialysis . Pili kēia i ka hoʻomaʻemaʻe ʻana i kou koko me kahi mīkini. Hiki paha iā ʻoe ke kūpono no kahi hoʻoili puʻupaʻa . Pono ʻoe e kūkākūkā i kēia me kāu kauka e hoʻoholo ai inā kūpono kēia iā ʻoe.
Nā hana a kākou e pono ai e hahai no ke olakino
I mea e pale ai i kou mau puʻupaʻa a mālama iā lākou e hana pono no ka lōʻihi loa, he mea nui loa ia e mālama i kahi nohona olakino.
- ʻAi pono: E ʻai i ka meaʻai kaulike a haʻahaʻa i ka paʻakai. Hiki i ka paʻakai ke hoʻonui i ke koko.
- E noho hana:Hiki i ka hoʻoikaika kino ke kōkua i ka kaohi ʻana i ke kaumaha a me ke koko, akā e pale i nā haʻuki pili e hiki ai ke hōʻino i kou mau puʻupaʻa.
- Mai puhipaka: Hiki i ka puhipaka ke hōʻino i nā kīʻaha koko i loko o nā puʻupaʻa a hoʻonui i ka pilikia o ka hoʻokumu ʻia ʻana o nā cysts.
- E inu i ka wai he nui: Hiki i ka maloʻo ke hoʻonui i ka pilikia o ka hoʻokumu ʻana o nā cysts.
He aha kā mākou e manaʻo ai i ka wā e hiki mai ana? Aia kekahi mau pilikia ʻē aʻe?
Lohi pinepine ka ulu ʻana o nā cysts. Inā ʻoe e kāohi i kou koko a ola i kahi nohona olakino, hiki iā ʻoe ke mālama i kēia ulu ʻana ma lalo o ke kaohi. Akā i loko o nā makahiki, hiki iā lākou ke ulu nui a hōʻino i kou mau puʻupaʻa.
ʻO ka wikiwiki o ka holomua ʻana o ka maʻi e pili ana hoʻi i ka gene āu e loaʻa ai (PKD1 a i ʻole PKD2). Ma keʻano laulā, ʻoi aku ka nui o ka pilikia o ka poʻe me ka hemahema gene PKD1 i ka loaʻa ʻana o ka hāʻule ʻana o ka puʻupaʻa ma mua o ka poʻe me ka hemahema gene PKD2.
Hoʻokomo pū ʻo ADPKD i kahi pilikia o nā pilikia olakino ʻē aʻe.
| Ka pilikia hiki ke loaʻa | He wehewehe maʻalahi |
|---|---|
| Aneurysm (ka nāwaliwali a me ka pehu ʻana o ka paia o kahi kīʻaha koko i loko o ka lolo) | He kūlana weliweli loa kēia. Inā ua loaʻa i kekahi o ka ʻohana kēia kūlana, he mea nui e hoʻomaopopo i ke kauka. |
| Nā cysts i loko o ke akepaʻa a me ka pancreas | Ma waho aʻe o nā puʻupaʻa, hiki ke loaʻa nā cysts i loko o kēia mau kino. |
| Nā maʻi valve puʻuwai | Hiki ke hoʻonui ʻia ka pilikia o ka hoʻomohala ʻana i nā kūlana e like me ka mitral valve prolapse. |
| Ke koko kiʻekiʻe i ka wā hāpai (Preeclampsia) | ʻOi aku ke kiʻekiʻe o kēia pilikia no nā makuahine hāpai me ADPKD. |
| ʻO Hernias a me Diverticulosis | Nā kūlana i hoʻokumu ʻia e ka nāwaliwali o nā paia o ka ʻōpū a me ka ʻōpū nui. |
He mea nui e noho ikaika i ka noʻonoʻo i ka wā e noho ana me kahi maʻi e like me kēia. E kamaʻilio me kou ʻohana a me nā hoaaloha e pili ana i kēia. Eia kekahi, e hoʻomau i ka launa pū me kāu kauka a e hahai pono i kāna ʻōlelo aʻo.
Leka Lawe-Home
- He maʻi hoʻoilina ʻo ADPKD e hoʻoulu ai i nā cysts i loko o nā puʻupaʻa.
- ʻO ke koko kiʻekiʻe kahi hōʻailona maʻamau a mua loa o kēia maʻi.
- Inā loaʻa kēia maʻi i kekahi makua, aia he 50% ka manawa e loaʻa ai i kahi keiki kēia maʻi.
- ʻOiai ʻaʻohe lāʻau lapaʻau piha no kēia, hiki ke kāohi ʻia ke koʻikoʻi o ka maʻi ma o ka kaohi ʻana i ke koko a me ke alakaʻi ʻana i kahi nohona olakino.
- He mea nui e mālama mau i ka launa pū ʻana me kāu kauka a hahai i kāna ʻōlelo aʻo.
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